"I know life is hard, I think everyone knows that in their hearts, but why does it have to be cruel as well? Why does it have to bite?"
That's a quote from the Stephen King book 11/22/63 I have been rereading it as I can't concentrate on anything new but I need to keep my mind busy. I read that quote and all I could think was "isn't that the fucking truth?". I get that life isn't fair, I understand that life is hard. But sometimes it is unnecessarily cruel. I know that I am not the first person ever to have a sick baby. I know that there are babies sicker than my baby. But sometimes I feel like I am all alone on an island of angry and no one out there could possibly have it worse than I do.
This week when we went to Oncology they told us that Charlies cancer is the result of a genetic mutation in his CBL gene. The "exciting" part is that it's a brand new mutation and he is the first to ever present with it. Exciting to the world of genetic cancer not to me obviously. I am not angry that they find it exciting or interesting. These are people who dedicate their lives to research of this stuff and I understand why they find it exciting. I wish it wasn't happening but I do not fault their excitement. Now the part where life is being extra cruel...they wanted to know if I had ever considered that since Charlie had this mutation Henry could have it as well. Why would I consider that my other child also had a genetic mutation that would cause cancer? That is not something that ever crossed my mind not even once. So now Henry has to be tested as well. Henry is 2 and is healthy and has never had problems. I guess that doesn't necessarily mean much but I tell myself that to comfort me. Because hurting both my boys seems unnecessary and beyond unfair.
Then on top of that news as it turns out Charlie's white blood cell count more than doubled in two days. Infection? Bone marrow overreacting to surgery? Leukemia becoming more aggressive meaning he will need a round of chemo while we wait for a bone marrow transplant? No one knows yet. There are so many things they don't know about Charlie yet. He still remains a mystery in so many ways. Nothing mysterious to me though, he is my baby and I love him and I plan to fight for him. I will use my anger to fight for him because I don't know what else to do with it. Shaking my fists at the sky to yell at what feels like a malevolent god seems pointless. Asking why me seems pointless. Being angry that the world is full of shitty mothers who get perfectly healthy kids and don't have to go through this hell seems silly. So I will use it to fight. I don't know how, I don't know what to fight for but I just know I will fight.
I told my mom that I had to believe that Charlie was going to be okay. Because otherwise why put him through all this hell? What is the reason for this torture if he won't be okay? I understand that kids die every day after going through even worse but I can't just accept that he won't make it. In the middle of the night though when all is quiet all I can think is about how fucking awful it will be is if we go through all this and at the end of it all we have is a giant stack of medical bills and nothing else but painful sad memories.
There are a lot of people out there supporting us. A lot of people rooting for Charlie. Yet I still feel so alone. I'm obviously not but I can't help but to feel otherwise. I also feel pathetically sad. I read all these inspiring stories of cancer survivors and I do not feel capable of being inspiring. I feel capable of being angry and sad and that is my limit.
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